Saturday, June 6, 2009

short honeymoons suck

Trevy's current Med Sched...

AM

300 mgs Banzel crushed in applesauce
50 mgs Topiramate crushed in applesauce
100 mgs B-6 crushed with maple syrup
1 3-6-9 Omega squeezed into his morning yogurt smoothie


PM

300 mgs Banzel crushed in applesauce
75 mgs Topirmate crushed in applesauce
100 mgs B-6 crushed with maple syrup



Trevy's current Therapies...

Speech Therapy once a week. We're beginning to introduce simple (and modified) Picture Exchanges. I'll share more about this later...cause we're doing some groovy stuff that deserves a post of it's own! Trevor is at a 12-15 month level in his Speech/Cognition.


Occupational Therapy once a week. This is typically puzzles...Mr. Potato Head...and other fine motor enhancers. We've also introduced a weighted vest and some light brushing to help on those SUPER active days. Trevor is evaluated at 9-10 months fine motor skills.


Physical Therapy once a week. It totally tickled my funny bone. A set of professional eyes watched this video from the other day...and sent me an email telling me not to panic...but recommending I consider having a PT eval for Trevy. I laughed SO hard! I have a weird sense of humor. Trevy does indeed receive PT. And we've even been to a see a Dr. Ortho. But he recommended (a barbaric torture device) night leg braces . I want to take a picture to give some umph factor. But frankly...I'm tired. And you're all creative imaginative people. Anyway...our PT comes to our place once a week and works with Trevor for an hour in a variety of ways. Walking up & down the stairs. Rolling on a big ball. Tummy time. We're focusing a lot of energy on building his core strength. Which is tied to fine motor development. Which is connected to speech. I've learned that each element is intricately connected. Other than his core & right sided weakness Trevor's gross motor skills rock. For being a seizure boy n' all.


We also have a weekly gym class. It's basically free play time. With lots of neat-o equipment that someone else gets to store for our playing pleasure!


All of the above are compliments of our local Early Intervention.



Trevy's To Do List...


Dr. Neuro (Dr. Rockstar agrees) has recommended weaning Banzel. We saw zero improvement in seizures or cognition. If anything...both got worse.


Topomax (now the generic Topiramate) has been a much better ride. Trevor seems to be handling it well. And at our last increase...my heart fell for it. The "honeymoon hope". The morning after our last up Trevy had a cluster first thing in the morning. As usual. But then went the WHOLE day long without another cluster! Until right before bed. Two mild clusters. Which gave me sweet dreams. Until the next morning. When the honeymoon had obviously ended abruptly. And we're back to gobs of seizures again. Like I said...short honeymoons suck!


Anyway...


We'll keep the Top and add Depakote. If any readers have experience...please share in the comments section! I'm lazy...and would rather learn from you than hunt it all down on my own!


We still do not have a date to see Dr. Rockstar. He will be out of the country teaching future Dr. Rockstars for the next week. Plus he's been busy! Another part of the delay is that he has to review all of Trevy's information prior to scheduling a date...to make sure we don't need any additional testing. He has received everything with the exception of one EEG cd.



And that's a wrap.

5 comments:

blogzilly said...

I like how you laid it all out there. Maybe I ought to add in the B-6, where'd you get it? He gets so wired in the late afternoon/early evening. SO aggressive.

We officially started Vigabatrin yesterday. No honeymoon here. Still seizin' away.

baby trevor's mommy said...

I'm glad you say that Ken. Cause I was thinking while I listed everything that maybe it's overkill. But then I know how much I crave information. Real life info. Not textbook info. And thought what the heck...lol...

Anyway...

Our B-6 is prescribed. Although you can get it over the counter too. It's SUPER bitter...and it has been tricky trying to find the right mix for it. Maple syrup works best for Trevy. I know other families use chocoloate syrup too...

It is supposed to be a mood stabalizer...so maybe it would help some? It certainly couldn't hurt.

Vigabatrin was a heart-breaker for us. I had read one too many stories of kids going seizure free after "just one dose". I think I had convinced myself for six Vig testing months that the next dose would be our's! We had a handful of decent days...but in the end it was obviously not our drug. That said...I hope you see better results than we did! I truly deeply am hoping that!

...danielle

Holli said...

We're on 9 ml of Depakote liquid (3 ml, 3x daily). I haven't noticed any major ill side effects so far. We had to get routine bloodwork every 2 wks to check levels and liver function. We've been on it since Jan. There seemed to be some improvement in the beginning..Can't say whether or not I think it's doing anything now. Oh, and Austin's taste buds must be whacked, but he doesn't mind it straight. He actually seems to like it. It tastes like flavored cough syrup to me. UCK!

Good luck!

therextras said...

What about 'day' braces? Sigh. Also, consider asking about a Benik body vest. Trevy is included in my daily prayers. Barbara

Margo said...

Wow. It's all so much isn't it?
I too like the way in which you outlined everything...made it easy to understand & visualize. Ahd good information...I wasn't aware of B6 being a mood stabilizer. That's worth looking into for our family. Thanks for the info!
We're looking into weighted vests, blankets, lap bags for master W who is super busy, energetic, jumpy, etc. I've even found a few sites on how to make your own. They are expensive. Hope it helps your Trevy.
Hmmm...maybe the OT's have an energy vest for parents so that we can keep up with our little ones? THAT would be super!
Sending prayers that the right "cocktail" is found soon!
M